Wednesday, April 18, 2018

Meet Lenna Couch—Teenager, Fundraiser, Cancer Survivor

Three years ago the Couch family of Hyde Park took a ski vacation. While on the trip, daughter Lenna, then 11 years old, came down with a nasty sinus infection. Naturally parents Todd and Jennifer were concerned, but no one could have predicted the family was about to start an arduous journey of pain, fear and, ultimately, healing.

The Couch family at the LCH fundraiser in December - they raised $14,500!

Lenna began taking antibiotics for her sinus infection, but soon her left eye swelled completely shut. Doctors at Cincinnati’s Children’s Hospital ordered a CAT scan and diagnosed Lenna with “a really bad sinus infection with ocular issues,” said dad, Todd. When stronger antibiotics and steroids failed to ease the infection, Lenna submitted to another CAT scan. This time the test revealed “a hole in her skull above the eye,” Todd said. Lenna’s doctors continued to believe her sinus infection was at the root of her illness. They hospitalized her and performed a craniotomy.

When Lenna finally got home she was nauseous constantly and complained of pain in her tailbone. “In our gut, as parents, we knew [the new symptoms] were connected,” mom Jennifer, said. And they were right. As Todd noted, “An MRI of Lenna’s tailbone lit up like a Christmas tree.” After a biopsy procedure, this time the doctors gave a much more concerning diagnosis. Eleven year old Lenna Couch had Langerhans Cell Histiocytosis, or LCH.

All of Lenna’s friends at Skate For LCH event

LCH is a rare form of cancer that begins in the LCH cells. Our LCH cells help our bodies fight infection, but Lenna’s cells were growing and multiplying too quickly. When this happens, according to the National Cancer Institute, “LCH cells build up in certain parts of the body where they can damage tissue or form lesions.” In Lenna’s case, the diagnosis was multi-focal bone LCH. “It caused painful tumor-like lesions on many different bones in my body,” Lenna explained.

As you might imagine, the family was devastated by the diagnosis and by the fact Lenna had undergone an unnecessary craniotomy. However, when you meet them, you can tell right away the Couch family shares an unbreakable bond. Though Lenna’s illness sent them down an incredibly difficult road, they walked that road together.

An in-patient at Cincinnati Children’s, Lenna distracted herself by playing games and texting friends.

For the next year Lenna underwent therapy with mainly mild side effects. But by late September of that year her back began to hurt. “I told my parents, ‘It’s back, I know it is’,” Lenna said, referring to her cancer. Tests revealed five new lesions on her back. Now Lenna’s doctors took a more aggressive approach to her disease, putting her on the same chemotherapy treatment typically reserved for leukemia patients. For eight hours each day Lenna underwent chemo, and like many others, she reacted poorly to it. “She needed the drug,” Jennifer said, “but it hurt her.”

Ultimately Lenna underwent four surgeries and endured two and a half years of chemotherapy. Happily, by May 2017, Lenna’s LCH was in full remission and she remains healthy. “She’s doing well,” Todd said. “I feel good,” Lenna added. “I’m building my stamina playing squash and trying to get back into my everyday life.”

For a now 14 year old, everyday life includes school. Lenna’s illness was disruptive. Between 5th and 8th grades she missed roughly 100 days of school. However, she’s grateful to the teachers and administrators at Seven Hills School for accommodating her needs. “They were very helpful throughout the process,” Lenna said.

The nursing staff at Cincinnati Children’s on the day of Lenna’s last chemo treatment came in to sing a song to her to exclaim, “No More Chemo!!”

Jennifer added, “Sometimes they would Skype her into class. Her art teacher came to the hospital to work on projects.” Lenna also noted her friends helped. “They were great,” she said. “Very supportive.”

It’s that support that Lenna and her parents now want to give back to the LCH community. To celebrate her 14th birthday, Lenna held a fundraising skate party, “SK8 for LCH.” Over 200 kids attended. In January 2018 Lenna and her parents, in partnership with Cincinnati Children’s Hospital and their Giving Hope website, delivered a check in the amount of $14,500 to Dr. Ashish Kumar and his team at Children’s.

If possible, the Couch family will make SK8 for LCH an annual event. Funds can help bring greater awareness to LCH research. “They’ve been treating it the same way for 30 years,” Jennifer noted. “They need to discover how to inhibit gene mutation,” said Todd.

In addition, money raised could be used to help other families who suffer and struggle with LCH. Because Lenna and her parents live in Hyde Park, they had easy access to Cincinnati Children’s Hospital. Other families may need to travel many miles to get here, incurring even greater expense and stress as they tackle this rare disease.

Lenna summed up her passion for fundraising: “As hard as my journey was I know some kids with LCH have been battling the disease even longer and with even more aggressive types than I had. My goal is to increase awareness for this relatively unknown disease and to raise money to fund research in the hopes that Dr. Ashish Kumar and his team at Cincinnati Children’s Hospital can find better ways to diagnose and treat this terrible disease.”